Unable to Score ADOS :-( | Ambitious about Autism
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Unable to Score ADOS :-(

ChasingButterflies's picture

Unable to Score ADOS :-(

Fri 8 Jan 2016 3:20pm

Hi everyone. 

I am absolutely distraught. I am 99.99% certain that my son is autistic. His peadiatrician has hinted to as much as well although said she can't say officially until he has his ADOS. Had the ADOS today and he was so anxious that they couldn't get him to interact with them and therefore couldn't score him. I initially had him referred to the CDC when he was 18 months old - he's now four and a half years old - and we are three weeks from moving out of the borough. It has been a long and exhausting road with months between appointments. This ADOS was supposed to happen four months ago. We were reffered to the clinical psychologist 13 months ago and still no appointment! Meanwhile we are left to deal with his communication difficulties and behvioural problems and sensory issues and everything else all by ourselves. His school are sensitive, supportive and flexible but they have their limits. We were so hoping to get a diagnosis before we move. They said they would get him seen in school but every time we have to wait until the next assessment it takes months and we only have weeks. The thought of starting all over again in a new area is so depressing to me. I don't think I have the physical energy or emotional strength to go through another three years of this! 

Sorry for the rant. In short...

1. has anyone gone private? Can you share your experiences/advice? I realise not all LAs accept a private diagnosis but this doesnt bother us as we will probably home school after the move anyway and I've been told the label can be irrelevant as help/funding etc. is allocated on individual needs and so I doubt we'd get more assistance than we currently do, which is little. The diagnosis would be for him so he can better understand himself and for us as a family so we can access certain things like autism-friendly events and communities. 

2. has anyone found they were able to access autism-friendly events and communities without an official diagnosis? 

Thank you for you time. 

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  • SherpaMum's picture

    Hi, I am sorry the ADOS assessment wasn't successful.

    we managed to access support groups etc before diagnosis.

    i hope things work out.

  • ChasingButterflies's picture

    Thank you SherpaMum x


  • JosieB's picture

    Hi Chasing Butterflies


    I too accessed support before diagnosis.  I was three and a half years waiting for assessment for Tom and all through that time he was seeing a child psychologist and play therapist at the local child guidance clinic.   I also had great support from CAMHS and our local Carers Trust.   Another support I got did take maybe a year or so because of staff illness and lost paperwork and that was getting an assessment of needs done by the local social work department which then enabled Tom to access other supports such as respite and being put on a Befrienders Waiting list which couldn't then be done without a social work referral.



    Josie - Community Champion
  • ChasingButterflies's picture

    Thanks Josie! 


  • ChasingButterflies's picture


    I just wanted to return to this post to say that the ADOS assessors have been amazing and not only did they see my son in school as proomised and within a couple weeks of the ADOS but toogether with the peadiatrician they were finally able to give him a diagnosis. I truly beleive this diagnosis will help him access future support, access autistic friendly events and to grow up with an understanding of himself and his needs. 


  • SherpaMum's picture

    That is wonderful news! 

  • NickyB's picture

    Oh that's fantastic news.What a relief for you yes

    Nicky - Community Champion

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